joyrich Posted August 9, 2009 Share Posted August 9, 2009 I was diagnosed about a week ago with IIIB lung cancer. I am 64 and haven't smoked in 25 years. I was in the hospital for 2 weeks and they started with pnuemonia and went through tests for breasts,colon and bronchoscope. Negative. Did biopsy of left lung although most is in right and found cancer. They said it's in my lymph nodes and is inoperable as there is no mass. Doctor told me I had 2 months to live without treatment at 6:30 in the morning when I was alone and then went to Hawaii and didn't call. My husband was furious and found me another doctor.I thank god everyday for him. Everyone else seems to be running away. This week I had a port put in, sufferred arm pain afterwards that made me feel I was dying momentarily. The new doctor sent me for a brain MRI. Tuesday I will see him and I guess know the results. Scary is a big understatement. How in the world did you handle this? Joy Quote Link to comment Share on other sites More sharing options...
RandyW Posted August 9, 2009 Share Posted August 9, 2009 One day at a time!! And don't listen to a Doctor when they tell YA how much Time YA have. We laugh really hard at that statement. It is scary and that's OK to be scared but don't LIVE in Fear. Do what ya want, when Ya want to do it. Once the treatments start, You will probably notice a sense of relief Like something is being done to fight this . the beginning is especially overwhelming. Welcome Big Hugs and Lots of Prayers. Oh and if Doctor Know it all number one doesn't come back from Hawaii We have members there also ! Ya can run but YA cant Hide.... But glad you got a better doctor now.... Quote Link to comment Share on other sites More sharing options...
joyrich Posted August 9, 2009 Author Share Posted August 9, 2009 Thanks Randy for the support and a chuckle. Deborah was beautiful and obviously lucky to have you. Joy Quote Link to comment Share on other sites More sharing options...
Patti B Posted August 9, 2009 Share Posted August 9, 2009 Joy- Randy is sooooo right!!!!! We can take care of that guy for you. ALWAYS be with a doctor you can feel comfortable with - I had some bad luck with my second onc who actually fired me before I could fire him lol!!! But I just adore the one I have now. Also, tell your doc you don't want to hear statistics. You are NOT a statistic, you are an individual!! My first doc gave me 12 months tops - next month is my three year mark!!! Its hard to believe, but you truly will feel more comfortable once a treatment plan is in place. Then you know exactly what is going to happen and you are fighting this beast. Please keep us posted. Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
Donna G Posted August 10, 2009 Share Posted August 10, 2009 Welcome Joy, so glad you found us. Boy that first week is horrible! All I did was cry. Getting a port is a wonderful thing. Great for chemo and great for blood draws. Please keep us posted on how you are doing. Donna G Quote Link to comment Share on other sites More sharing options...
michellep Posted August 10, 2009 Share Posted August 10, 2009 Joy, Welcome to our family. We're happy to have you and if you ever need support, we're here for you. My husband also was diagnosed with pneumonia and then stage 3 adenocarcinoma. It all happened so fast and we're still trying to adjust. I'll be praying for you! Michelle Quote Link to comment Share on other sites More sharing options...
recce101 Posted August 10, 2009 Share Posted August 10, 2009 Hi, Joy. I'm the Hawaii guy who will be more than happy to take care of that first doc for you. And I'm cheap, too! I am 64 and haven't smoked in 25 years. I got my IIIb diagnosis when I was 71 and hadn't smoked for 43 years, so I can understand your shock. My cancer type is adenocarcinoma, which is not as closely linked to smoking as some other cell types, and I have a feeling it may have been caused by some chemicals which I used daily in a printing business for the 20 years immediately preceding my diagnosis. Dosen't matter now, just have to deal with reality. But it's been 3 years since this episode began, I turned 74 last month, have been on one treatment or another continuously since October 2006, and am feeling pretty good, with the main problem being lack of endurance when doing something requiring moderate activity. I did finally finish our backyard fence this morning, though with the help of our 38-year-old son. The link at the bottom of the page will tell you more than you ever wanted to know about my story. Arm pain after getting a port is quite common. My first one was installed in September 2006, and I couldn't lift the arm on that side above my shoulder for about a week. The port became blocked this year, and I had it replaced in April — same arm problem, but it was fine after about 10 days. Aloha, Ned Quote Link to comment Share on other sites More sharing options...
jaminkw Posted August 10, 2009 Share Posted August 10, 2009 Joy, this is really uncanny. I was diagnosed (IIIb) in Oct 07 having been hospitalized in September with pneumonia and a pleural effusion. They had found cancer cells, adenocarcinoma in the fluid, but no mass. I hadn't found a person on any site in almost two years with cancer but no tumor. Now you are the second in the past week. The other was a mother whose daughter posted about her on cancergrace.com. I was very healthy when I was diagnosed and that combined with the absence of a tumor that we all associate with cancer, made it no less scary but hard to accept. I continue to be healthy except for the side-effects of the chemo from time to time. I went into remission after the first round (6 carbol/taxol/avastin + 2 maintenance avastin) of chemo and remained so for a year. Six months of that was off treatment. No one ever told me I had "x" number of months to live. My doctors at MDACC said "it's not curable but it's manageable." DO NOT LISTEN TO STATISTICS. I agree that the early time is the most difficult. Once treatment starts, you begin to settle down into what we refer to here as the "new normal." Please keep us posted on further developments in your treatment plan etc. People here are not only compassionate and supportive, they have a wealth of knowledge about how to handle possible side-effects of a wide range of chemos. It's not the nightmare it used to be. Wishing you some peace and strength in the coming days. Judy in Key West Quote Link to comment Share on other sites More sharing options...
jstdzy Posted August 10, 2009 Share Posted August 10, 2009 Joy, Welcome aboard. It was a huge blessing for me to find this site. People understand here. Sorry you have to be here, but glad you found us. Scream, yell, cry, ask questions. We hear you! Dana Quote Link to comment Share on other sites More sharing options...
SandraL Posted August 10, 2009 Share Posted August 10, 2009 Hi Joy. I was Stage 3b at diagnosis as well. And although it has been far from an easy ride there is life and hope after diagnosis. Get a better doc and keep us posted on how you are doing. This site is full of good people, support and information. Take care Sandra Quote Link to comment Share on other sites More sharing options...
Connie B Posted August 11, 2009 Share Posted August 11, 2009 Hi Joy, So sorry you had to find us, but I am glad you did. Everytime I hear a new member come here and talk of being scared, or worried or overwehelmed, I go back to day one (14 Years ago) when I was dx.d with adenocarcinoma stage IIIB. You can click on below my signature and read my story. Your not alone in this journey. At least not anymore. (((Joy))) We'll do our best to get you through this step by step. Take a deep breath in and blow it out, this is a bumpy ride, but it's very doable, treatable and beatable. Your in good hands here. I look forward to getting to know you. Quote Link to comment Share on other sites More sharing options...
fillise Posted August 11, 2009 Share Posted August 11, 2009 Joy--I'm so glad you found us. There are no statistics that tell you how long you have. You need an onc who will fight as aggressively as you want to fight. Treatment can do amazing things. We have many long term survivors. As for how to handle the shock? One day at the time. Your life has changed forever, but you can still plan for the future, still laugh, still love and still cry. I promise you will do all of those things and will come to find what is called the "new normal." Susan Quote Link to comment Share on other sites More sharing options...
fighting4mom Posted August 11, 2009 Share Posted August 11, 2009 Hi Joy, Adding my voice of support and gentle hugs to you. Echoing what all of these fine folks have said. Blessings to you in the fight, Kimberly Quote Link to comment Share on other sites More sharing options...
joyrich Posted August 11, 2009 Author Share Posted August 11, 2009 Got results today of brain MRI. Numerous lights less than 1cm. Doctor told me I was dying but only god knew when. I am going to radiologist tomorrow for first time. I will fight for now but really feel my life is slipping away. Kinda like being in a whirlpool and not being able to grab onto a line anywhere. Not really afraid of death but so sad for the losses I am facing, of the people I love, of losing my chance to finish my story. I think I should feel braver. Joy Quote Link to comment Share on other sites More sharing options...
recce101 Posted August 12, 2009 Share Posted August 12, 2009 Don't pack it in yet, Joy. For crying out loud, we're ALL dying and have been since birth! And don't be thrown for a loop about the brain mets. Those of course SOUND bad, but they can be effectively treated in many, perhaps even most, cases. You should get good info from the radiation oncologist. Hang in there. You're just starting this trip, and when you get more details and a treatment plan you should feel a lot better. Much Aloha, Ned Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted August 12, 2009 Share Posted August 12, 2009 Welcome Joy, Glad you found us. It's a lot to take in at first and is understandable how you feel but as mentioned (Ned) don't pack it in yet. We have many members who have far out lived their prognoses. Lung Cancer in not a death sentence and one can live with it for many years. Often treated as a chronic (mine is) disease. Stay with us, ask away and keep us posted. Rich PS: I would get a second/ third opinion, your doctor sounds very negative and offers little hope. Quote Link to comment Share on other sites More sharing options...
jstdzy Posted August 12, 2009 Share Posted August 12, 2009 Joy, Don't give up yet! Just because we've been dx'd with cancer doesn't mean it's going to kill us. You might get hit by a bus tomorrow ! It really just depends on you and the cancer. Some of us respond amazing to the treatments, you could be one of those. Some people on this site live for years and years after a very negative diagnoses, some of us just get plain lucky. I totally and completely understand how you feel, felt that way myself. Just don't throw in the towel yet and if you weren't scared out of your mind something would be wrong with you! Dana Quote Link to comment Share on other sites More sharing options...
Carleen Posted August 12, 2009 Share Posted August 12, 2009 Welcome Joy, I see you've already received so much wonderful advice and support, so I would just like to add my prayers and warm hugs to you. I can't say exactly how it feels to receive the news you have, and how to go forward since I was the caregiver. It always amazes me, impresses me, and teaches me immeasurably when I see the true courage, strength and beautiful spirit displayed by so many people here as they go through this journey. What I can say is that you don't have to do this alone. You've found a group of people who are not only vastly knowledgeable on treatments, sides effects, alternative treatments, and many medical issues, but are experienced in the emotions, the fear, the anxiety, the gratitude, love and support that comes with this diagnosis. We are here for you, whatever you are feeling, whatever you are needing. Come here to vent, cry, scream and say anything you need to get off your chest. We will listen and support without judgement. We actually understand and know it is all normal. Come here to celebrate good test results, and rejoice in lifes milestones and just plain old good days. The people here can help make them brighter. This is a frightening path to be on, but you now have the thoughts, prayers and support of hundreds of true friends. How do you move forward? You fight forward because there is not an acceptable alternative, and you accept all the help, support and love that is offered. It often helps people to be able to help others. Let us help, let your family help, let friends help. Everyone will feel better for feeling like they are contributing to the fight. And with this much support, the battle can be won. You can win this. It's been done before, even with being given poor prognosis'. There are those here that are great examples of that such as ConnieB. 14 years... WOW. You too can be a great example for someone else down the road. Keep your hope, and your optimism strong. They will help you battle this beast down. Don't let it win before the war has even begun by robbing you of your hope. God Bless you Joy, and you are now in my daily prayers. Through prayer all things are possible. (I wish I could do more, like invent the cure for cancer, but for now this is my best weapon) Quote Link to comment Share on other sites More sharing options...
fillise Posted August 12, 2009 Share Posted August 12, 2009 Joy--you don't have to feel brave. It is perfectly normal to be frightened. Just don't give up. You don't know how much time you have and you may very well have a lot more than you think. There are many, many long time survivors here--even with brain and other mets. Talk to the radiation oncologist and keep getting opinions until you find someone who will fight as hard as you want to fight. Susan Quote Link to comment Share on other sites More sharing options...
dianew Posted August 12, 2009 Share Posted August 12, 2009 I can understand how you feel right now, but give yourself time and I believe you will start to feel better. When I was dx with NSCLC (IIIa or b, never did find out exactly) last November, it was the second time and I figured "well, this is probably it for me". Then I signed up here and read all the stories of so many survivors, found a doctor I felt good about, got started with treatment, and began to feel better about things. But the one thing that I think has made the most difference to me is a message someone posted (and I don't remember who posted it or on what site) that told about her husband who had lung cancer. She stated the doctors had not given him a very good prognosis and he was just sure he was not going to survive. He did much better than the doctor had predicted and survived over 7 years, but she said the sad part was that he wasted the entire 7 years waiting to die and not enjoying his life at all. That post really woke me up. Everyone here told me things would look better once I got started on treatment, and they were right. Please give yourself a chance and don't give up. I will be keeping you in my prayers. Diane Quote Link to comment Share on other sites More sharing options...
Barbb Posted August 12, 2009 Share Posted August 12, 2009 Come and write out your fears and feelings here if you feel comfortable sharing. I can not tell you how much that helped me when my husband was fighting his battle. The people here are absolutely the best you will ever meet. We will help you fight with our prayers and love. Barbb Quote Link to comment Share on other sites More sharing options...
joyrich Posted August 16, 2009 Author Share Posted August 16, 2009 I started a 15 day plan of radiation to my whole brain Thursday. I was so scared. They made a mask that fit so tight around my face the claustrophobia took over but I started to think of my my beautiful Cavalier King Charles Maggie running in the wind and I was watching her hair fly and ears float and it helped take me away from the scary place. I decided to fight the most I can and try to be as happy and brave as I can. I told the radiation guy I knew he would blast those mets to smitherines and as he did it I pictured them smashing with every light. I hope it helps because I am finding out how much I want to live. In no pain for now and that is a good thing. Thank you all so much for your ideas, thoughts and prayers. Joy Quote Link to comment Share on other sites More sharing options...
RandyW Posted August 16, 2009 Share Posted August 16, 2009 Joy take a look through the Inspiration and the good news Forums some time. They also can lift your spirits and give you an energy boost.. Remember the Doctor treating you is slowly dying also. We all are! Only God Knows when though!!!!!! Love the visual for the WBR treatment! That's an awesome idea!! Glad it helps!!! Hang in there and remember this mantra, "Die, Cancer, Die!!" Quote Link to comment Share on other sites More sharing options...
Barb73 Posted August 16, 2009 Share Posted August 16, 2009 Joy, I cannot add anything above and beyond what the others have said before me, except to give you an example of a cancer survivor, my Bill. What I can say is that my husband was dx'd four plus eight months ago with Stage IIIB adenocarcinoma, inoperable, and within that first year, was a Stage IV. A neck node began to grow and stand out and hurt. He then had a brain met, which as luck would have it, was in a place that couldn't be surgically removed. We opted for WBR 20 treatments, and he is still operating on all cylinders (well, maybe forgets it's garbage day every now and again), but overall, he is quick to mentally assess things on a daily basis. We have a "new normal" life, and he is presently in treatment as he is routinely being treated as a "chronic." I remember very clearly how very, very frightening all the initial words coming at us felt. Once treatment began, and we were in the regimens, we both felt a bit more secure. Keep your "visual" of that lovely scene. That is the sort of thing that helps so much, Joy. Leave room in your heart for joy. Any doctor who thinks he is God is an a** - plain and simple. Barbara Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted August 16, 2009 Share Posted August 16, 2009 Joy, Glad to see things are looking up. Check out The Wellness Community, they have two in Florida as well Gilda's Place and it's free. Might be one near you. It's important to talk to people in person also who have been there, done that and not to go it alone. Hang in there Rich http://www.thewellnesscommunity.org/Default.aspx (The Wellness Community) Quote Link to comment Share on other sites More sharing options...
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